Friday, January 28, 2011

Staying Balanced

As anyone on the autism journey can tell you, having the tools to help your child function better is not nearly enough.  Even within the bounds of Isaac's Fort Knox diet, I have to keep diligent in order to maintain a balance with him.  The challenge with this lately has been that Isaac is gaining more tools of his own by the day.  Tools like increased vocabulary and communication skills, imaginative play, and understanding of more abstract concepts.  Sometimes his getting "off balance" sneaks up on me, because he has so many improvements now that can mask the warning signs that things in his diet (food and sensory) need to be tweaked.

I guess I should start with how things get off balance, and then tell you the warning signs.  Things get out of whack with his diet when, well, mommy gets lazy.  It went a little something like this yesterday: "Fine, even though you had cereal for breakfast, pretzels and pears for snack, pretzels and tuna for lunch, you can have mac-n-cheese for dinner. Because mommy doesn't feel like having the fight."  But mommy ALWAYS pays for "not having the fight".  An all carb day equals an almost guaranteed invasion of yeast.  An over-growth of yeast in a spectrum kid means wakefulness at night, increase in repetitive behaviors and speech (or stimming), increase in sensory sensitivity, increase in aggressiveness and inattention. 

What has the increase in yeast looked like in Isaac these past 48 hours?  Repetitive self-regulating behaviors like dumping out all of his toy animals and picking them back up over and over and over.  The return of phrases like "nunga nunga nunga" and "gitta gitta gitta" as filler in his speech.  Wakefulness in the night and bed wetting.  A non-stop schizophrenic menagerie of reenactments of movies, books, tv shows, and characters this morning while trying to get him ready for school.  He was a kitty cat crawling up the stairs to the bathroom, a frog hopping onto the toilet, spotting dragons outside the window while he peed, was hyper-scared of the "gronkles and night furies" outside of the window while I was trying to get him dressed.  I had to convince him that his clothes would protect him from the dragons just so that I could get him dressed.  I am failing to remember all the mini-espisodes from tv shows and books thrown in between these bigger pretend themes...quotes from The Shark in the Dark book, etc. 
"Isaac, stop playing games.  We need to get dressed for school." 
"Mommy, I'm playing games! Ah! Dragons! Come here, little fishies..." 
It was like being caught in a pre-school media storm.  I could barely keep up.  I found myself sympathizing with parents of kids with A.D.D and A.D.H.D.  I have NO idea how we made it to school on time.

And all this from too many carbs?  Maybe yes and maybe no.  Today was the first day this week that Isaac didn't have a substitute teacher at school.  Isaac's parapro offered to give him apple slices when I was late to pick him up on Wednesday.  I said "No, no he CANNOT have apples.  It's on his list."  Phew.  Crisis averted.  Or was it?  That afternoon we were at the grocery store when Isaac started talking about apple sauce.  I asked him if he had apple sauce at school, and he said "yes" immediately.  Huh.  That would explain the dark circles under your eyes and red in your cheeks.  Lesson learned.  It PAYS to be that mom.  The mom who politely makes sure that the sub and parapro know the deal with the diet.  Every time I hesitate for fear of being that crazy mom, I pay for it later with a crazy kid.  I will forever be that mom from now on.  I really don't care if they think I'm obnoxious.  He is my kid, after all.

The good news is that if I catch it early enough, I can swing Isaac back in balance fairly quickly.  Today we are focusing on increasing his protein and fat intake to calm down the yeast.  I sent a hot dog and a pear to school for snack.  He will be having eggs for lunch, and chicken with dinner.  I have been correcting his filler speech with real words so that he can learn to catch himself.  When he says "nunga nunga, hippo" when naming his animals I say "and a hippo...and a tiger..." etc.  We deal with it, and try to be more diligent and less lazy next time.  It's all one big changing experience, and I'm learning a little more every day.

Thursday, January 27, 2011

Food for Thought

Many of you have expressed an interest in Isaac's diet with questions like:
What can't he eat?
What can he eat?
So I thought I'd address each one of these in a post today, because Isaac is napping (which never happens) and I'm avoiding housework.

Isaac cannot eat anything with gluten or casein in it.  We also try to avoid apples, bananas, grapes, oranges, cherries, dried fruit, chocolate, and things high in sugar.  We also try to avoid simple carbohydrates that tend to turn to sugar- like corn.  We do not usually do fruit juice, but do water with a splash of agave nectar in it instead.  Agave nectar is a natural sweetener that is lower on the glycemic index.  We also try to avoid things with yeast in them.

Isaac can eat most meat and seafood, though I have to check lunch meats and sausages for casein.  He does fine with pears, strawberries, and watermelon.  He likes broccoli and winter squash.  He can have coconut ice cream and coconut milk.  We use Earth Balance spread for butter.  I make him special Chebe bread or use other gfcf bread mixes for him.  He can eat rice, or gfcf pasta.  He is not deprived of good food, don't worry.  In fact, he probably eats healthier than most kids.  Besides, they make gfcf versions of pretty much anything these days.  We use probiotics and other supplements to help with his yeast and gut issues.

We do not do gluten and casein because Isaac is one of the many spectrum kids that doesn't process these proteins well, leaving him in an opiate-induced state.  He doesn't sleep well, has diarrhea or is constipated, hyper, has rashes, and low verbal skills when ingesting gluten and dairy.  Now, a year after starting the diet, accidental ingestion of these foods even bring on a fever, rash, and noticeable regression in behavior and communication that take anywhere from a couple days to a week to disappear. Avoiding the above fruits/vegetables are part of Feingold's diet or are foods just so high in sugar that they feed Isaac's yeast issue.
How did I learn about all these things?  Our occupational therapist/nutritionist, Paula Johnson, laid the groundwork for my understanding of the link between Isaac's autistic behaviors and his diet.  From there I read, read, and READ some more.  I highly recommend this book as an easy though very helpful read on these topics.

I hope this answers some questions, but if you are curious about anything else- just ask.

Tactile sensory smarts for winter - Lansing Autism & Parenting |

Tactile sensory smarts for winter - Lansing Autism & Parenting |

Tuesday, January 18, 2011

Perfect Timing

Disclaimer:  It's 10:20pm and I'm exhausted.  This is not going to be my best written post, but I had to share!

Instead of staying up tonight to nurse my new addiction to music via I decided to dive back into the book I was telling you about the other day (yesterday?).  Reading Kim Stagliano's journey with three autistic daughters spurred a trip down memory lane for me.  Things have been going so well with Isaac lately that the past is becoming a blur.  This is a great thing in general, but not very helpful when you are about to be expected to write about autism on a regular basis.  I had all but forgotten about  ALL of those early signs that something was very off with our child.  The red-rashed cheeks, ever-runny nose, aggressiveness and/or inattention to those around him, hyper activity, space staring sessions, loss of speech, etc, etc, etc.  It's remarkable how similar her first two years with her girls were to our first two years with Isaac.  However,  we got lucky.  Isaac was two in 2009, not in the 1990s like her first two girls.  The information and resources that enabled us to have early intervention with Isaac weren't so easy to come by back in the 90s.  She helplessly watched her girls spiral deeper into their autism before finding treatments that would help them.

Reading her words made me recall some of my worst days with Isaac-before we really knew what was going on with him.  I remember one day when he was particularly "off".  I had recently had a friend of mine who is an autism behavioral specialist give me her honest opinion on his quirks.  My mind was reeling with the prospect of the A-word and Isaac's behavior was only making me feel more paranoid and more helpless.  On this day he just seemed completely gone.  I'd get right in his face, say his name several times and he would just look past me and then start spinning in circles and saying one of his two favorite autism-typical phrases "gottagottagotta" or "tickatickaticka".  His behavior was out of control.  When Andrew got home from work that day I bombarded him with my concerns-to which his denial and fear could only respond with defensiveness.  I ran upstairs, sat on the bed, and cried my eyes out.  Andrew came up to check on me.  The conversation went a little something like this:

"Why are you crying?"
"Our kid has autism.  I know it."
"He does not.  Stop."
"Well SOMETHING is wrong.  He is not normal!  I am home all day with him- I see what he's like.  I KNOW something is not right." Sob. Sob. Sob.
"Libby, you aren't a doctor.  Just wait and see what Early On says.  You're being hysterical."

He was right about one thing; Isaac does not have full blown autism like the Stagliano girls, but he could have.  Researchers say that early intervention and bio-medical help can sometimes help reverse or improve a child's severity of autism.  Do I believe this is true?  Absolutely.  It has been so in our case, at least.  Kim's first daughter's autism progressed to where she was having seizures- a common thing for people with autism.  I remember, pre-diet days, when we were concerned that Isaac might be having mini-seizures.  We'd be driving in the car and wouldn't be able to get his attention for minutes on end and he'd just be staring in the same spot, without blinking or moving.  I'd even reach back and snap my fingers in his face a couple times or shake his arm before he'd finally respond, but it wasn't like he was responding to me.  He would just all of a sudden come out of it.  He drooled a lot back then too, and he was done teething.  Both things worried me.  Everyday that we didn't have an answer was one more day where he got, well, weirder.  His A-word was knocking on our door with it's bags packed, ready for an extended stay.  Ah, all this stuff I've almost forgotten and a couple chapters in a book puts me right back there.

Fast forward to tonight.  I started back cleaning for a friend of mine.  She let me bring Isaac along- something she offered in the past, but I always turned down because I couldn't conceive of how I'd get her house clean with him clinging to me and refusing to have anything to do with anyone else.  I knew he'd be fine tonight.  I quickly got him dressed, packed my supplies, and swept him out the door.  This is something that would have never happened 1.5 years ago.  Last minute swoop Isaac out the door for a quick run to the store with little to no prior warning or preparation?  Nightmare.  One big screaming, thrashing nightmare.  Transitions were from a circle of Hell that Dante himself couldn't imagine.  Leaving the house took the kind of planning usually reserved for military maneuvers.  Not so tonight.  He walked right up to Melynda's door and greeted her.  She told him that they had a kitty and a bunny and he immediately asked where they were.  He reciprocally played with Melynda and her daughter the whole time- asking and answering questions, giving hugs, and when it was time to go he said "Bye Krysten.  Byebye.  See you later/tomorrow."  At one point in the night, he and Krysten shared a clementine.  I told him to say thank you.  He waited a minute and then said, "Thank you. That orange was tasty."  WHAT?!  Yes, my child said that.  Yes, yes he did.  And I couldn't be more proud or relieved.  In fact, other than some echoalia he seemed like a pretty typical 3 year old boy tonight.  And this former youth pastor is not ashamed to say, GOD am I GRATEFUL!  I'm grateful for the time in which my son was born, the time in which we happen to live in an area with the resources to help him, and grateful for Kim's book that is making me reflect on some things I might have otherwise chose to  forget.  Perfect timing.

Monday, January 17, 2011

Coffee Cup Reflections

With our respective cups of morning coffee and coconut milk...
Isaac and I are listening to my new musical obsession, Bon Iver, and watching the sun come up on our snow-blanketed back yard.  It is, in essence, suburban heaven.  He's playing with toys on the floor, being angelic and nothing short of amazing with the way he rein-acts scenes from Toy Story with his plastic counterparts.  I've been taken aback by how balanced he seems lately.  He definitely still struggles with some things communication-wise, but his speech has been remarkable (for him) lately.  He is consistently answering my- albeit- simple questions.  He also asks me questions all the time, but I wouldn't have it any other way.  He is singing songs throughout the day and singing along with mommy's music.  He is connected- something I could not say with confidence at age two.

After starting this book about a mother who has three daughters- all of which are autistic- I'm feeling pretty blessed with our PDD-NOS.  Even after a meltdown over me moving the red chair in our living room back to where it goes, random sensory sensitivity about things "tickling" him out of no where, and repeatedly getting kneed in the eye during story time because he's still not aware of his body- I am feeling pretty confident that he'll be able to blend into his peers fairly well when the time comes.  I can take a shower and not worry about him getting into trouble or trying to runaway.  I can go shopping or to a restaurant without dreading meltdowns, hyper-nervous activity, or any of the other crazy things that used to keep us at home.  The author of this book cannot do these things, and I feel for her.  Her life is autism.  She lives, breathes it, is IMMERSED in it everyday.  The things I obsess about are similar to that of hers, but at a much lesser degree.  She's waiting on a miracle for her girls, and I've already got mine...  I'm sure I'll be writing more about her as I get further into the book.

In other news, I just agreed to become the Lansing Autism and Parenting Examiner so I will probably be blogging less and writing for them more, but I will post links to my articles here and on facebook.  Things are changing lately.  As Isaac gets older I'm finding it important to rediscover myself and my role as an adult in society again.  This opportunity will hopefully help with that process.  The proverbial cheerios are falling off the sweatsuit, I guess!  Wish me luck.

Monday, January 10, 2011

What is PDD-NOS anyway?

I get asked this question a lot so I thought this link would help:

Sensory Processing Disorder and Auditory Processing Disorder fall under this category.  Isaac has aspects of both.  If you catch him on a "bad day" it is very clear that Isaac is different.  He's oversensitive to his surroundings, has trouble communicating or doesn't communicate at all, he can be aggressive, his play becomes very rigid and repetitive, and he has odd "stimming" behaviors like spinning in circles, hand-flapping, and chewing and drooling (he's three) on days like this.  On a good day, he may seem pretty normal- as long as you only ask the limited questions he will actually answer.  Friends who have known us for awhile can each probably share a story of what Isaac was like before the gluten-free/dairy free diet and therapies.  In fact, feel free to share a memory below.

Also, I found this article in Time about Sensory Processing Disorder that should help clear things up for those who are interested:,9171,1689216,00.html

Tuesday, January 4, 2011

2011 Goals

With a new year comes the usual assessing of life and goal setting for myself and Isaac.  But first I want to highlight some of the improvements I've seen in Isaac recently.

1) Communication:  He's getting better at answering yes or no questions, asking open ended questions, and using more complex sentences.  He is needing me to translate less for him and for the people talking to him.

2) Independence:  He's the most comfortable he's ever been with people other than me.  I can drop him off with a sitter, or in the church nursery, or let a friend drive him in their car without him freaking out that I'm not with him.  He will more readily let other people help him with things instead of insisting that "mommy does it".  (He even let Uncle Peter help him wipe over Christmas break.  You're welcome, Uncle Peter!)

3)  Play:  I've witnessed him playing with peers more, rather than just parallel playing.  Let's just say he's already playing doctor with a certain little girl named Mara.  And as I've said 100 times before, he is constantly using his imagination.

4)  Developmentally:  He can say most of his ABCs correctly.  He sings songs and nursery rhymes.  He associates numbers as something more than a sequence.  He knows all his colors and shapes.  He can write a few letters of the alphabet.  He can draw faces, trees, and cars.  He can name all of his friends from school while at home.

All of this is AWESOME!  My goal for 2011 is to help him do more of the same, more consistently.  The best way I've found to do this is a whole lot of one on one play.  He got a lot of that from his uncles over Christmas break and the result was that his speech went through the roof.  They definitely tapped into his sensory play needs, which in turn freed up his mind to do some talkin'.  While I doubt I'll be giving as many dragon rides as they did, I have been busting out the play-doh and play foam a little more often.  I am going to try to get him down in the basement and more interested in his slide, swing, and trampoline (when it gets fixed) and really work on honing his sensory diet in a more intentional way.  I've found that I've kind of gotten off track with the "intentional" part.  It's pointless to own all the tools, have a sensory room, and not be consistently using them.  To answer your question about what a sensory diet is, please click the link below: